HIV/AIDS Fireside Chat Retreat in Boston Tackles Pressing Issues

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

The ADAP Advocacy Association hosted an HIV/AIDS "Fireside Chat" retreat in Boston, Massachusetts among key stakeholder groups to discuss pertinent issues facing people living with HIV/AIDS and/or viral hepatitis. The Fireside Chat took place on Thursday, November 8th, and Friday, November 9th, and it built on the previous retreat held in Tampa, Florida earlier in the year.

Photo Source: Getty Images

The Fireside Chat included a series of three moderated white-board style discussions about the following issues:

• HIV & Aging
• Drug Importation
• Ryan White Program Reauthorization

Each of the white board discussions was facilitated by a recognized content expert followed by an in-depth dialogue among the retreat attendees. The discussions were designed to capture key observations, suggestions, and thoughts about how best to address the challenges being discussed at the Fireside Chat.

The following represents the attendees:

• Tez Anderson, Executive Director & Founder, Let’s Kick ASS (AIDS Survivor Syndrome)
• William E. Arnold, President & CEO of the Community Access National Network (CANN)
• Marcus Benoit, Ryan White Regional Liaison & Eligibility Coordinator, Houston Regional HIV/AIDS Resource Group, Inc.
• Brandon Cash, Theratechnologies
• Jeffrey S. Crowley, Program Director at the O'Neill Institute for National and Global Health Law, Georgetown University Law Center
• Tishna Dhaliwal, Director, Healthcare Policy & Strategy, Johnson & Johnson
• Edward Hamilton, Executive Director & Founder of ADAP Educational Initiative
• Hilary Hansen, Executive Director, Advocacy & Strategic Alliances (US) at Merck
• Stephen R. Hourahan, Executive Director, AIDS Project Rhode Island (APRI)
• Lisa Johnson-Lett, Treatment Adherence Specialist / Peer Educator, AIDS Alabama
• Brandon M. Macsata, CEO of the ADAP Advocacy Association
• Julie Marston, Executive Director, Community Research Initiative (CRI)
• Tim Miley, Associate Director, State Government Affairs – Northeast, Gilead Sciences
• Theresa Nowlin, advocate
• David Pable, Community Co-Chair SC HIV Planning Council
• Samantha Picking, PharmD, RPh, AAHIVP, Healthcare Specialty Supervisor, Walgreens
• David Reznik, Chief, Dental Medicine, Grady Health System Infectious Disease Program
• Alan Richardson, Executive Vice President of Strategic Patient Solutions, Patient Advocate Foundation
• Shabbir Imber Safdar, Executive Director, The Partnership for Safe Medicines
• Carl Sciortino, VP of Government & Community Relations, Fenway Health

The ADAP Advocacy Association is pleased to share the following brief recap of the Fireside Chat.

HIV & Aging:

The discussion on HIV & Aging was facilitated by Tez Anderson, Executive Director & Founder, Let’s Kick ASS (AIDS Survivor Syndrome) based in San Francisco, CA. Anderson has coined the phrase, AIDS Survivor Syndrome, to address the litany of issues facing HIV/AIDS long-term survivors. Adults over 50 make up the majority of people living with HIV/AIDS in the United States. By 2020, it will increase to 70%. According to Anderson, "Aging populations present challenges to the healthcare system, and providers are ill-prepared for an aging population. We are going to have be creative in devising new strategies for providing integrated HIV and geriatric care, and for meeting the long‐term needs of clients with increasingly complex needs."

Since aging with HIV is not a monolithic, retreat attendees dived into accentuated aging, living with co-morbidities, HIV-related enteropathy and/or peripheral neuropathy, as well as other issues affecting quality of life for the aging HIV population.

The following materials were shared with retreat attendees:

•  National HIV Curriculum: HIV in Older Adults

The ADAP Advocacy Association would like to publicly acknowledge and thank Tez for facilitating this important discussion.

Drug Importation:

According to Shabbir Imber Safdar, Executive Director, The Partnership for Safe Medicines, there are a wide variety of options for addressing financial impediments to healthcare access. The healthcare supply chain is convoluted and two people that receive the same treatment, test, or medicine often pay wildly different amounts. Not all of these are equally safe for patients.

Shabbir challenged the retreat attendees with a series of questions. First, we must understand the supply chain. How does it work in the US vs other countries? When it fails, how does it fail? What examples of failure exist that we can learn from? How do counterfeits get into our supply chain? Is our drug supply safer or more polluted than other countries? Why is that?

The discussion about the dangers involved with drug importation, including what exactly is the risk of patients breaking the supply chain? Is it just a loss of financial resources? Is a counterfeit that's just a placebo really that dangerous? And beyond the potential dangers, then other issues emerge when obtaining medicine from other countries domestic drug supply. Do they have shortages of their own? Are there other countries large enough to supply medicine to us?

The retreat attendees were also asked, so what's the answer? Can we judge different proposals on the basis of patient safety? Is there any time we want to sacrifice patient safety for access?

The following materials were shared with retreat attendees:

• How Did That Canadian Pharmacy Medicine Get To Me?
• Betty Hunter’s Death Illustrates Danger Of Fake Drugs
• FORTY-THREE STATES AND COUNTING: The Deadly Combination of Imported Fentanyl and Counterfeit Medicines
• Comment: Importing Canadian Drugs Could Harm HIV Patients
• Drug Importation Policy Is A Hard Pill To Swallow
• The Case Against Canada Drugs
• U.S. Drug Importation: Impact On Canada’s Prescription Drug Supply
• Exportation Of Pharmaceuticals From Canada To The United States

The ADAP Advocacy Association would like to publicly acknowledge and thank Shabbir for facilitating this important discussion.

Ryan White Program Reauthorization:

The discussion about underserved communities served (or potentially served) by the Ryan White Program was facilitated by Jeffrey S. Crowley, Program Director at the O'Neill Institute for National and Global Health Law, Georgetown University Law Center. The world has changed since the 2009 reauthorization, as Jeffrey noted during this discussion. Research trials definitively have confirmed the benefits of immediate treatment, and the clinical guidelines have also changed. The use of care continuum and monitoring of durability of viral suppression continue to highlight gaps in care. The enactment of the Affordable Care Act (32 states and 62% of the HIV population lives in states that have expanded Medicaid) has changed the healthcare landscape. The 340B Drug Pricing Program is under pressure.

Some of the emerging issues/needs identified included the ongoing role of Ryan White in larger insurance system; early treatment and rapid start of ART/better supports for re-engaging people in care; addressing the needs of an aging HIV population; role of Ryan White in covering PrEP and PEP; Ryan White as a model for or its role in curing HCV and addressing the opioid crisis; and new technology is coming: preparing for long-acting agents.

Finally, Jeffrey led an all important dive into the risks in not reauthorizing versus the risks in reauthorizing the Ryan White Program. The Democrats regaining control of the U.S. House of Representatives certainly changes the dynamics surrounding possible reauthorization. 

The following materials were shared with retreat attendees:

• Coverage and Care Pathways for People with HIV: A New Baseline
• HIV and the Opioid Epidemic: 5 Key Points
• Long-Acting HIV Treatment and Prevention are Coming

The ADAP Advocacy Association would like to publicly acknowledge and thank Jeffrey for facilitating this important discussion.

Additional Fireside Chats are planned in 2019.

Transgender Reflection & Remembrance

By: Jen Laws, Board Member, ADAP Advocacy Association, and HIV/transgender health advocate

The ADAP Advocacy Association would like to honor our transgender brothers and sisters by recognizing the tragic losses, as well as victorious gains affected populations experience throughout the year.

In light of the New York Time’s report the Trump administrations is seeking to create a unified, yet exceptionally limited definition of “sex” to the exclusion and limitations of civil right protections for transgender people, we’d like to recognize our industry partners who vocalized opposition to this move.

Photo Source: Stopstreetharassment.org

In addition to ongoing work in policy and grants support the following actions were taken by key industry partners:

• Gilead celebrated Transgender Awareness Week by issuing a distinct statement reinforcing support of the transgender community
• Johnson and Johnson, Glaxso-Smith-Kline, and ViiV Healthcare signed on to the industry statement in entitled “Businesses for Transgender Equality”

With the recent observance of the annual Transgender Day of Remembrance (November 20th), this year, in the United States, 22 documented transgender people were murdered and countless transgender lives lost to suicide. We take the time to honor the lives of our community’s losses and encourage our partners to join us and their local communities in recognizing these lives and the struggles transgender people face every day.

• Christa Leigh Steele-Knudslien, 42, was the first known case of deadly violence against the transgender community in 2018. A local news outlet reports that she was found dead in her home on Friday night in North Adams, Massachusetts. She was a trans beauty pageant organizer. According to reports, Leigh Steele-Knudslien's husband, Mark, turned himself in Friday night, admitting to killing his wife. January 8, 2018.
• Viccky Gutierrez, 33, is the second reported transgender person killed in the United States in 2018. She died after being stabbed and her apartment in Los Angeles was set on fire while she and her dog were trapped inside. Kevyn Ramirez, 29, of Los Angeles was charged with murder and arson after admitting to stabbing Gutierrez in her home after a dispute and then setting fire to the apartment January 12, 2018.
• Tonya Harvey, 35, is the third known transgender person to be murdered in 2018. Harvey was shot to death shortly before 5:30 pm in Buffalo, New York.
• Celine Walker, 36, was shot to death in Jacksonville, Florida on February 4, 2018. Sources claim that Walker's body was found with fatal gunshot wounds in an Extended Stay America hotel at about 8 p.m. and pronounced dead at the scene. Additionally, Walker's family and friends publicly shared their disgust toward Jacksonville Sheriff's Department and the Florida Sun Times-Union misgendering her
• Phylicia Mitchell, 45, was shot in the chest around 6 p.m. outside her home on West 112th Street near Detroit Avenue, in the Cleveland's Edgewater neighborhood.
• Zakaria Fry, 28, was found dead in the town of Stanley, New Mexico, on February 19, 2018. She went missing in New Mexico in mid-January, and her body was later found 40 miles outside of Albuquerque on February 19. Rancher Fidel Montoya found one body in a trash bin along the road, and another body was recovered about two miles away. Police confirmed them to be Fry and her roommate Eugene Ray on Tuesday, February 27, 2018.
• Amia Tyrae Berryman, 28, suffered multiple fatal gunshot wounds outside of a motel in East Baton Rouge, Louisiana on March 26, 2018.
• Sasha Wall, 29, is the eighth known transgender person to be murdered in 2018. Sasha was fatally shot on April 1 in Chesterfield County, South Carolina. Her body was found with multiple gunshot wounds and slumped over her car's steering wheel on Sunday, April 1, 2018.
• Carla Patricia Flores-Pavon, 18, was strangled to death in her Dallas apartment May 9
• Nino Fortson, 36, a transgender man fatally shot multiple times during an argument May 13 in Atlanta.
• Antash'a English, 38, known to friends as Antash'a, died June 1, 2018 in Jacksonville, Florida
• Gigi Pierce, 28, a transgender woman fatally shot dead in a hotel on the Southside of Jacksonville, Florida on June 24, 2018.
• Diamond Stephens was 39 years old Black transgender woman who was shot to death on June 18 in Meridian, Mississippi.
• Keisha Wells,was 54, died in a parking lot due to a gunshot wound to the abdomen on June 23 in Cleveland.
• Sasha Garden was 27-year-old transgender woman, was found dead in Orlando on July 19
• Dejanay Stanton was 24, was shot to death early in the morning of August 30 on the south side of Chicago
• Vontashia Bell was 18, suffered a fatal gunshot wound August 30 in Shreveport, Louisiana
• Shantee Tucker was 30, was shot to death September 5 on a Philadelphia street by someone firing from inside a pickup truck.
• London Moore was 20, was found shot to death September 8 in North Port, Fl.
• Nikki Enriquez was 28, of Laredo, Texas, was found dead near Interstate 35 in south Texas September 15.suspect is Juan David Ortiz.]
• Ciara Minaj Carter Frazier age 31, of Chicago, Illinois, was found dead with stab wounds on October 3, in the West Garfield Park neighborhood.

The ADAP Advocacy Association remains committed to providing valuable resources to better serve and advocate for transgender people affected by HIV. Community & industry partners interested in learning more about implementing Transgender advocacy policy recommendations and action can contact us at info@adapadvocacyassociation.org.


Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.

Can The HIV Community Beat President Trump?

Guest Blog By: Josh Robbins, imstilljosh.com

Reprinted with Permission from Josh Robbins, imstilljosh.com

How to continue to survive Trump if you are living with HIV

Photo Source: imstilljosh.com

The Trump Administration is weirdly disinterested in the HIV epidemic in the US. And that’s the biggest understatement that I have ever written. 

President Trump fired the remaining members of the Presidential HIV Council one year ago. The Office of National AIDS Policy has been empty since the beginning of his administration. (I called the day Trump was inaugurated to see if the office was still open and I left a voicemail. I have not received a return call. Shocker!?!?)

Money intended for funding the US fight against the epidemic at home and internationally has been chipped away and it appears that HHS is just trying to be quiet about it all—almost fly under the radar. Who can blame them? They are probably doing the best thing at the moment, honestly.

I inquired to HHS about PACHA (Presidential Advisory Council on HIV/AIDS) and the status of Kaye Hayes.

Here were my questions: 

• Is Kaye Hayes still the executive director of PACHA?
• How many members are currently on PACHA? Who are they?
• What is the current status of PACHA?
• When was the last time that PACHA provided guidance or input to the administration? Can I receive a copy of that?
• When is the next planned meeting?
• And if no members are currently on the council, is there any guidance being given to the current administration? If so, by whom?

Here’s the official response by the HHS spokesperson: 

Photo Soure: imstilljosh.com

I interpret this as no news. And silence. Not good!

This Is Not Going Well

When you think about the administration’s ‘less than friendly’ welcoming of immigrants and those seeking asylum in the U.S., or those visiting from other countries and remembering the nightmare Trump has put many through by changing travel rules and instituting immediate travel bans—it’s just so damn overwhelming. Honestly, I can’t even remember all the bad stuff.

Here’s the real tea about it: It’s only been two years! Can we all make it two more years?

YES! Yes, we can. And we will.

When Trump became President, I wrote about the best ways for us all to survive. Other popular websites in the HIV space called it the Trump-apocalypse.

Read: 10 Ways To Survive A Trump Administration

So, how we continue to survive this administration?

1. We are not the victims. We are must never view our advocacy as such. We are strong, healthy, and marginalized. But we will survive!
2. We must engage the administration at every opportunity—not just complain. We were caught off our game when he was elected. We better prepare better for the 2020 election. 
3. We must have a message of hope, based in science and demonstrate what we are advocating for—to live well. #UequalsU
4. We still need to support national ASOs and organizations like ADAP Advocacy Association. 
5. We need some of our leadership to change. We must identify new leadership to be our community voices. And we must stop allowing a small caucus to say they speak for us when they have missed the boat largely with U=U. 
6. We must lean on each other when we need it. Sean McKenna calls it a buddy program. Get a buddy!!! 
7. We must recognize disparities and work together to end them… and we must make room at the table for others who have been silenced or ignored. But we must not allow this to drive wedges within our community. We need to work together as one unit! 
8. We need to ask for personal help when we need it. We are advocates and many are long term survivors. But we must allow our pride to disappear when we need help.

It has been a hell of two years, but it’s been a hell of an epidemic and we are going to make it!

I love you all!

Let’s do this!!!

[Check out the original blog post by Josh Robbins online at imstilljosh.com]



Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.

Three Red States Expand Medicaid – What That Means for ADAP

Guest Blog By: Marcus J. Hopkins, Consultant, Community Access National Network (CANN)

The 2018 midterm election was remarkable in several ways: over 47% of registered voters participated in this election – the highest turnout since 1966 which saw 49% (Domonoske, 2018); the Democratic Party regained control of the House for the first time since 2011; a record number of women won seats in the House (Watkins, 2018); two women became the first Native American women elected to Congress (Watkins); two other women became the first Muslim women elected to Congress (Watkins); Jared Polis became the first openly gay man to be elected governor of a state in Colorado. But something else historic happened, as well – Idaho, Nebraska, and Utah joined Maine in begin the only states to expand Medicaid under the Affordable Care Act (ACA) via a ballot initiative (Pramuk, 2018). And these states are pretty deeply Red.

Photo Source: Political Dig

For those unfamiliar with Maine’s Medicaid debacle, here is a quick rundown: Maine votes adopted a Medicaid expansion via a ballot initiative in November 2017 which required the submission of a state plan amendment within 90 days and implementation within 180 of the measure’s effective date (which would have been April 03, 2018). Maine’s famously cantankerous and curmudgeonly outgoing Governor Paul LePage (see pictured above) – who vehemently opposed expanding Medicaid – failed to meet that deadline, illegally ignoring the will of the voters – he famously stated he would go to jail before allowing Maine to expand Medicaid (Miller, 2018), and took the issue to court where he has been repeatedly smacked down by judges who insist that he comply with the law and implement the expansion. Governor-Elect Janet Mills – who campaigned on following the law and authorizing the Medicaid expansion and was elected in the 2018 midterm elections – appeared in court on Wednesday, November 07, to listen to arguments in an advocacy group’s case against the Maine Department of Health and Human Services (Bleiberg, 2018).

What is troublesome about the myriad refusals of LePage to abide by the law is that it may have just been a prelude to how Republican governors in these Conservative states may attempt to thwart the will of the voters in Idaho, Nebraska, and Utah. To be fair, two of these governors has in some capacity stated they will abide by the will of the voters: Governor-Elect Brad Little (Idaho) has stated that he will implement the initiative (Guilhem, 2018); Governor Pete Ricketts – just elected for a second term – though a vocal opponent of the measure, has previously stated that if expansion made it onto the ballot, it would be up to the voters (Quinn, 2018). Governor Gary Herbert of Utah vocally opposed Utah Proposition 3, which not only orders the expansion of Medicaid, but implements a prohibition against any changes that would reduce coverage, benefits, or payment rates below policies in place on January 01, 2017.

While these responses are not full-throated endorsements of expansion, they are likely the best we can expect from members of a political party that has vehemently opposed the expansion of Medicaid at almost every turn. The problem with their opposition, however, is that Medicaid expansion – and, in fact, Universal Healthcare in general – are highly popular; even amongst Republican voters, support for Universal/Single-Payer/Medicare-For-All healthcare provided by the government is growing steadily as healthcare costs continue to rise well above the rates of inflation and wage growth.

So, what does Medicaid Expansion mean for the AIDS Drug Assistance Program? Well, a few things:

What we have seen in states that implemented Medicaid Expansion under the ACA is that a significant percentage of ADAP/Ryan White recipients have been shifted off of the Ryan White Program and over to Medicaid. This has had various impacts, both positive and negative, for those who have traditionally relied upon Ryan White and ADAP for payment and coverage of the HIV treatment and medications. Depending upon the way the patient’s state implements Medicaid, they may now be required to pay premiums, deductibles, and/or co-pays for doctor visits and medications that were previously covered by Ryan White and ADAP. That said, Ryan White funds canbe used to cover those costs (HIV/AIDS Bureau, 2014).

Patients living in states that have not expanded Medicaid often have to wait for an AIDS diagnosis in order to qualify for Medicaid coverage, even if they meet the income threshold. Additionally, certain states may also require that patients’ Viral Load or CD4 T-Cell numbers meet a specific threshold, as well, meaning that, if a patient’s Viral Load falls below or CD4 T-Cell count rises above the designated threshold for approval, they may lose their eligibility for coverage. This was my case in West Virginia before the state expanded Medicaid. Expanding Medicaid means that people living with HIV no longer have to wait for an AIDS diagnosis in order to qualify for Medicaid coverage (so long as their income is below the threshold).

The shifting of these patients off of Ryan White ADAP budgets has resulted in lower expenditures on drugs and other HIV treatment costs, which allowed the Ryan White Program to begin providing payment for private health insurance for all Ryan White clients using Ryan White funds through insurance assistance. Only three states do not provide this service – Texas, Idaho, and Mississippi. With the expansion of Medicaid in Idaho, this may allow the program the resources to begin doing so.

In order to shift clients off of Ryan White and onto Medicaid, a client’s income must fall within the specified percentage of the Federal Poverty Level (FPL) respective to each state’s guidelines. In most expansion states, that threshold is 138% of the FPL ($16,753.20 per year for an individual). This percentage for eligibility for Ryan White ranges from 200% (Idaho, Iowa, and Texas) to 550% (South Carolina), which is much more forgiving than the Medicaid requirements.

An additional issue can arise with patients who have been shifted onto Medicaid, as well. While the Ryan White Program was designed solely to focus on the needs of people living with HIV, Medicaid – which is the largest payor for HIV services in the United States – was not designed specifically with the needs of HIV patients in mind. There may be something of a barrier to care and treatment that exists when patients who are used to dealing with Ryan White staff who are familiar with the social, psychological, and medical needs of HIV patients are suddenly expected to communication with Medicaid employees who may not be sensitive to or accommodating of the unique needs of people living with HIV. While it may seem small, that simple communication barrier can lead to lower adherence to medication regimens, missed appointments, and falling out of the continuum of care. The National Alliance of State and Territorial AIDS Directors (NASTAD) holds numerous Technical Assistance conferences and meetings throughout each year where Medicaid directors and staff can attend various workshops and plenary sessions that teach them better ways to approach people living with HIV and to increase cultural competence when dealing with this population.

In general, Medicaid expansion has been a boon for the Ryan White and ADAP Programs. Hopefully, the transition to expanded Medicaid coverage in Idaho, Nebraska, and Utah will be smooth, and people living with HIV will gain access to more options to treat their disease and lead happier, healthier lives.

References:

• Bleiberg, J. (2018, November 07). Day after election, Mills makes her presence felt at court hearing on Medicaid expansion. Bangor, ME: Bangor Daily News: Politics. Retrieved from: https://bangordailynews.com/2018/11/07/politics/day-after-election-mills-makes-her-presence-felt-at-court-hearing-on-medicaid-expansion/
• Domonoske, C. (2018, November 08). A Boatload Of Ballots: Midterm Voter Turnout Hit 50-Year High. Washington, DC: National Public Radio: Elections. Retrieved from: https://www.npr.org/2018/11/08/665197690/a-boatload-of-ballots-midterm-voter-turnout-hit-50-year-high
• Guilhem, M. (2018, September 26). Brad Little, Idaho's GOP Gubernatorial Candidate, Will Support Medicaid Expansion – If It Passes. Boise, ID: Boise State Public Radio. Retrieved from: http://www.boisestatepublicradio.org/post/brad-little-idahos-gop-gubernatorial-candidate-will-support-medicaid-expansion-if-it-passes#stream/0
• HIV/AIDS Bureau. (2014, June 06). Clarifications Regarding Use of Ryan White HIV/AIDS Program Funds for Premium and CostSharing Assistance for Medicaid. Rockville, MD: HIV/AIDS Bureau: Health Resources and Services Administration. Retrieved from: https://hab.hrsa.gov/sites/default/files/hab/Global/pcn1306medicaidpremiumcostsharing.pdf
• Miller, K. (2018, July 12). LePage says he’ll go to jail before he lets Maine expand Medicaid without funding. Portland, ME: The Portland Press Herald. Retrieved from: https://www.pressherald.com/2018/07/12/paul-lepage-says-hed-go-to-jail-before-he-expands-medicaid/
• Pramuk, J. (2018, November 07). Three red states vote to expand Medicaid during an election where health care was the top issue. Englewood Cliffs, NJ: CNBC: Politics. Retrieved from: https://www.cnbc.com/2018/11/07/utah-idaho-and-nebraska-approve-medicaid-expansion-ballot-measures.html?utm_campaign=KHN%3A%20First%20Edition&utm_source=hs_email&utm_medium=email&utm_content=67300319&_hsenc=p2ANqtz-_CWMrFMnVoHCXsdJhMXO7EHWikEaOn0ZFysQJPsMaAA6YjuHvlZp_TKaDDJvAMQg_QQJqAxVB_M3toFbTcXFF0L8RXaQ&_hsmi=67300319
• Quinn, M. (2018, November 07). Red-State Voters Opt for Obamacare. Washington, DC: Governing [dot] com: Topics: Health and Human Services. Retrieved from: http://www.governing.com/topics/health-human-services/gov-medicaid-expansion-voters-ballot-november-states.html
• Watkins, E. (2018, November 07). Women and LGBT candidates make history in 2018 midterms. Atlanta, GA: CNN: Politics. Retrieved from: https://www.cnn.com/2018/11/07/politics/historic-firsts-midterms/index.html

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.

HIV Patients Co-Infected With HCV Face Higher Mortality Rates

Guest Blog By: Marcus J. Hopkins, Consultant, Community Access National Network (CANN)

Reprinted with Permission from the Community Access National Network

A ten-year follow-up study has found that people living with HIV who are co-infected with Hepatitis C (HCV) face an increased risk of mortality by 4.3%, even when receiving treatment for HIV (Bender, 2018). The same study found that treatment with HCV Direct-Acting Antivirals (DAAs) resulted in a lower risk of mortality than those whose HCV went untreated, but that the harm caused by HCV still resulted in increased risk.

Photo Source: medscape.com

One of the primary consequences of untreated HCV infections is damage to the liver – damage that is no immediately repair itself once the virus is successfully treated. Liver fibrosis – scarring of the liver that prevents the organ from properly functioning – is not healed by HCV treatment, and depending upon the severity of the scarring, the liver may never completely regenerate. Those whose livers are cirrhotic – those with late-stage liver scarring – will likely never fully recover optimum liver function and may become dependent upon other prescription medications and dietary restrictions to aid in liver functions such detoxifying substances in the body, purifying blood, and making vital nutrients (Welch, 2017).

This issue is one that receives far less attention than it deserves and is part of why there is so much opposition against including Fibrosis Scoring in treatment determinations. While it may seem financially prudent in the short-term to limit treatment of HCV to those who are “sick enough” to be treated, the long-term negative health impacts of liver scarring are far costlier in the long-term. For those living with HIV, liver function is of critical concern as that is where most HIV medications are metabolized. If liver function is impaired, the drugs may not properly metabolize, making the treatment of HIV less effective.

References:

• Bender, K. (2018, October 23). HCV Increases Mortality of People with HIV Despite Antiretroviral Treatment. Cranbury, NJ: Intellisphere, LLC: MD Magazine. Retrieved from: https://www.mdmag.com/medical-news/hcv-increases-mortality-of-people-with-hiv-despite-antiretroviral-treatment

• Welch, C.M. (2017, August 16). Hepatitis C Treatment and Cirrhosis. Hep Mag. Retrieved from: https://www.hepmag.com/blog/hepatitis-c-treatment-cirrhosis

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.

BIO's 2018 Patient & Health Advocacy Summit

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

The ADAP Advocacy Association has long prided itself on building advocacy partnerships, and thus it is fitting that our organization's leadership — including board members Wanda Brendle-Moss and Jen Laws, as well as myself — was invited to attend the Biotechnology Innovation Organization's (BIO) 2018 Patient & Health Advocacy Summit in Washington, DC. What makes the annual event useful is it assembles the advocacy community, industry partners, regulators, academia, students, and of course, patients.

Susan Stein, MPH, who serves as CEO of the E4 Health Group, shared a simple, yet powerful characterization: "Partnerships between patient advocacy organizations and industry are more important than ever."

Photo Source: FierceAdvocate

The BIO 2018 Patient & Health Advocacy Summit brought together over 200 key stakeholders for two days of programming to discuss current policy issues, share best practices, and exchange ideas. Nearly two-thirds of the attendees represented the patient advocacy community. The BIO Summit also provided an invaluable opportunity to advance partnership among stakeholders in the healthcare ecosystem. Whereas the ADAP Advocacy Association's participation represented HIV/AIDS, there were many other disease groups in attendance, such as Psoriasis, Arthritis, Muscular Dystrophy, Metachromatic Leukodystrophy, and many more.

The BIO Summit immediately addressed the 800 pound gorilla in the healthcare ecosystem with an important pre-summit workshop on best practices for engaging with industry. As the patient perspective plays a more central role in the drug development process, it is recognized that clearer conflict-of-interest policies and best practices would better serve all stakeholders. The patient voice has moved beyond simply participating in clinical trials, and as a result industry and regulators are engaging patients earlier in the process. The 21st Century Cures Act includes a commitment to patient-focused drug development ("PFDD"). It amends the Federal Food, Drug, and Cosmetic Act to require the Food & Drug Administration to establish processes under which patient experience data may be considered in the risk-benefit assessment of a new drug.

The timing of the BIO Summit couldn't have been planned any better with the Trump Administration's latest announcement under its blueprint for prescription drug reform. The latest proposal would set up an international pricing index in an effort to drive down prescription drug costs under Medicare Part B, which in turn, could also drive down patient out-of-pocket costs. The U.S. Department of Health & Human Services ("HHS") Secretary Alex Azar discussed the "pro patient access proposal" at the BIO Summit, only hours after it was announced.

HHS's decision to announce an Advance Notice of Proposed Rulemaking ("ANPRM") translates into the patient advocacy community having ample time to weigh-in on it. It could very well be the case that the public comment period represents one of the times where the patient advocacy community and industry view things differently, but that is a good thing.

For a policy brief on the ANPRM, please visit: https://www.hhs.gov/about/leadership/secretary/priorities/drug-prices/ipi-policy-brief/index.html.

For a fact sheet on the ANRPM, please visit: https://www.cms.gov/newsroom/fact-sheets/anprm-international-pricing-index-model-medicare-part-b-drugs.

Comments on the ANPRM will be accepted until December 31, 2018 and may be submitted electronically through the CMS e-Regulation website at: https://www.cms.gov/Regulations-and-Guidance/Regulations-and-Policies/eRulemaking/index.html?redirect=/eRulemaking.

The ANPRM can be downloaded at: https://www.cms.gov/sites/drupal/files/2018-10/10-25-2018%20CMS-5528-ANPRM.PDF.

Policy Recommendations & Action: Transgender Advocacy

By: Jen Laws, Board Member, ADAP Advocacy Association, and HIV/transgender health advocate

As advocates, we are asked frequently about the concrete steps we would like to see from our industry partners. Effective advocacy requires actionable items, clear direction, and tangible benefits for affected communities. With this in mind, we have established a few recommendations for our industry partners to consider when seeking to do “the next right thing” for Transgender populations. We chose to highlight Transgender and Gender Non-Conforming populations due to disparate impacts in health this population faces.

While reviewing, industry partners may notice certain common principles: leverage of positions of power in advocating for governmental recognition of personal dignity, protections of individual right to access to care, “centering” affected populations and population needs in funding and proposals, “filling” gaps in necessary medical knowledge with regard to the specific needs of affected population, partnership with smaller entities, more closely connected to or run by affected populations, and an introspective evaluation of our own operations. After all, leading by example empowers and invites other partners to join us in best practices.

Effective advocacy may require precision in action; it also requires broad understanding outside of traditional scope of one’s organization. In understanding the variety of socio-economic determinates in health, to effectively close the gaps of disparities, we must also work to affect change in areas outside of health.

Policy Recommendations and Action: Transgender Advocacy

• Public comment on rulemaking:
• Religious Freedom/Conscience: “Religious freedom” is currently being used as a beacon call for restricting the rights and/or protections of LGBTQ persons. While not always specifically naming Transgender persons, the Trump Administration has preferred to use language regarding “medical sterilization”, a coded effort targeting transition related care such as cross-sex hormone replacement therapy and gender confirmation surgeries. Oppose these changes.
• Section 1557: The Trump Administration has chosen to not defend the reading of Section 1557 of the Affordable Care Act as interpreted by the Obama Administration. Government entities are enjoined from enforcing protections on the basis of gender identity and pregnancy history due to the Northern District of Texas ruling in December of 2016. The U.S. Department of Health & Human Services and U.S. Department of Justice has indicated the agencies will re-write the rule to exclude these protections. Oppose these changes.

• Amicus Briefs: 
• Employment and other rights as described under the Civil Rights Act ("CRA")of 1964: Case law has begun to recognize the inclusion of gender identity as covered by the prohibition of sex based discrimination in the CRA. The Obama Administration adopted an interpretation stemming from the Price Waterhouse decision on sex stereotyping: “but for” the sex assigned at birth/biological anatomy of a person, entities would respect the rights and protections of a person as their self-identified gender. The Trump Administration is seeking to codify into case law a strict reading of the “sex” provisions of the as “anatomical sex” as opposed to gender identity. Oppose these arguments where possible via amicus briefs and sign-on letters.

• Funding and Programing:
• Transgender specific organizations are often in competition for grant funding with larger LGBTQ organizations: Prioritize “by/for” Community Based Organizations ("CBOs") and projects when issuing Requests For Proposals for Transgender specific grants.
• Expand funding in RFPs for Transgender-specific grants: Often, Transgender-specific grants are ambiguous in nature and limited in funding. Ensure each Transgender-specific grant RFP is large enough for 1 FTE and deliverables has measurable impact on Transgender populations. Consider seeking a Transgender consultant to help draft these grant RFP.
• Ad Hoc Funding: Seek out Transgender-specific CBOs and ask what services they lack funding for.
• Fully fund full-time and part-time internships: Transgender persons often lack formal education requirements for employment, most typically due to fears of harassment and increased poverty experiences. As a result, it is common for Transgender persons to seek “underground economy” work. Funding internships exempt from formal education requirements and accounting for previous work experience and lived experiences would provide an opportunity to reduce poverty among Transgender persons, ensure health insurance coverage, and position Transgender persons to build formal and meaningful work experience while also assisting funded entities on a variety of projects.
• Fund Transgender-specific depression coping skills programming.

• Internal Competencies:
• Ensure local offices receive Transgender cultural competency training annually: Hire “by/for” organizations local to each office. This is especially important for community liaisons and sales staff.
• Hire Transgender persons: Estimates show Transgender persons are 1-3% of the population. Perform an internal audit and ensure internal employment statistics reflect this population.
• Ensure company sponsored health insurance covers gender affirming care: Many insurance carriers impose burdensome bureaucratic barriers to coverage approval for gender affirming care; ie. Gender marker changes on government identification or name changes as evidence of “living as the desired gender”. To fulfill either of these, requires a court order. Making gender affirming care the only type of standard medical care that requires a court order on a consistent basis. Ensure employee plan offerings do not impose such barriers.

• Lobbying:
• Lobby on behalf of Transgender rights protections legislation: Both on the state and federal level.
• Lobby state insurance regulators to standardize policies for gender affirming care: Few states have a codified avenue for complaint when an insurance company refuses to cover or imposes burdensome requirements to gender affirming care coverage.
• Lobby for Federal Qualified Health Center ("FQHC") infrastructure funding: Many Transgender persons rely on FQHC’s for their gender affirming care. Unfortunately, the federal government has not issued physical infrastructure support funding for FQHCs in 4 years. Work to ensure FQHCs are appropriately funded.
• Lobby for mental health funding in schools: Limited to no funding is provided to include development of coping skills in children. Transgender children or children exploring their gender identity are prone to depression due to social and peer stigma. Work with education lobbying efforts to ensure funding and programmatic develop of effective empathy building and coping skills building.

• Invest and research:
• Invest in and include transgender persons in research for product development; including but not limited to clinical study, marketing, and Transgender-specific research. Develop research ethics protocols for including Transgender persons in clinical research. Ensure studies include socio-economic adherence barriers among Transgender populations and meaningful strategies to overcome.
• Areas of interest may include hormonal impacts on mental health, efficacy of products among Transgender populations, hormone replacement therapy impacts on efficacy of products, and more.

• Build Partnerships:
• With Transgender-specific CBOs and Transgender serving CBOs.
• With lobbying entities working on behalf of Transgender persons
• With patient advocacy organizations working at the intersections of health disparities affecting Transgender persons; ie. HIV, STIs, addiction, etc.

Industry partners interested in learning more about implementing Transgender advocacy policy recommendations and action can contact us at info@adapadvocacyassociation.org. 

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.

NPR Examines Health Disparities Facing Former Inmates Living with HIV/AIDS

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

The inadequate approach to linking formerly incarcerated inmates living with HIV/AIDS in the United State to timely access to care and treatment gained an important spotlight. This week, National Public Radio's public health feature by Heather Boerner, "After Prison, Many People Living With HIV Go Without Treatment," draws attention to formerly incarcerated people struggling to get health care and treatment for HIV on re-entering society.

The ADAP Advocacy Association has elevated the issue among its public policy portfolio this year, highlighted by its Correctional Health Project — which has included numerous blog posts, an infographic, and forthcoming policy white paper on the role of the State AIDS Drug Assistance Programs ("ADAPs") serving these people. As noted on July 5th by our intern, Jonathan J. Pena, "Programs do exist, such as State ADAPs, which are designed to assist these individuals. But the most recent National ADAP Monitoring Project demonstrates that ADAPs are assisting some of these individuals, it is also clear more can be done to assist them. The National AIDS Strategy also provides some guidance to help formerly incarcerated populations achieve viral suppression."[1]

Photo Source: Kenyon Ellsworth for NPR

Boerner's article examines a recent study about post-incarceration release and the disparities that exist in gaining access to healthcare (including anti-retrovirals medications). Unfortunately, nearly one-third of the inmates tracked had fallen out of care within one year after being released from prison or jail.[2]

It isn’t to say that incarcerated and formerly incarcerated HIV-positive populations aren’t being served by the ADAPs. According to the National Monitoring Project’s annual report, services provided to recently incarcerated individuals in 2016 shows that 42% were receiving federal funds for ADAP-related services; however, 64% of those who were currently incarcerated in county or city jails were not being provided any services because the reach of ADAP doesn’t include jail divisions.[3]

Our forthcoming policy white paper aims to shed further light on the issue, with recommendations. We commend NPR and Boerner for covering this important issue on health disparities for former inmates living with HIV/AIDS.

__________
[1] Pena, Jonathan J. (2018, July 5). Linkages to Care During Post-Incarceration. ADAP Blog. Retrieved from https://adapadvocacyassociation.blogspot.com/2018/07/linkages-to-care-during-post.html. 
[2] Boerner, Heather (2018, October 9). After Prison, Many People Living With HIV Go Without Treatment. National Public Radion. Retrieved from https://www.npr.org/sections/health-shots/2018/10/09/655890525/after-prison-many-people-living-with-hiv-go-without-treatment?utm_campaign=storyshare&utm_source=twitter.com&utm_medium=social.
[3] National Alliance of State & Territorial AIDS Directors (2018). National Ryan White HIV/AIDS Program Part B & ADAP Monitoring Project Annual Report. Retrieved from: https://www.nastad.org/sites/default/files/Uploads/2018/2018-national-rwhap-partb-adap-monitoring-project-annual-report.pdf

Did Trump Pull the Plug on ONAP & PACHA?

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

The ADAP Advocacy Association has learned from a highly credible source that the Trump Administration will not fill the vacant director position at the Office of National AIDS Policy (ONAP), nor will appointments be made for the Presidential Advisory Commission on HIV/AIDS (PACHA). These important leadership roles have remained unfilled since President Barack Obama left the White House, or soon thereafter.

Photo Source: crooksandliars.com

Earlier this year the ADAP Advocacy Association called for the appointment of an ONAP director after Amy Lansky, ONAP's last-serving director, stepped down. Subsequently, it has been an issue at the center of our advocacy efforts, including a previous ADAP Blog. It should really come as no surprise that the Trump Administration, which has proven itself to not be friendly to the HIV/AIDS community, would leave ONAP vacant. 

Equally troubling is how the Trump Administration solicited nominations for PACHA, only to file them in the trash. It begs the question: Is there no regard for our community’s input into this nation’s public health response to the ongoing epidemic here in the United States?

Ryan White HIV/AIDS Program Funding Raided, Again

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

Over the summer the Trump Administration raided previously unspent Ryan White HIV/AIDS Program funding from Fiscal Years 2015-2016 to pay for its controversial "zero-tolerance" immigration policy. The ADAP Advocacy Association sounded the alarm not once, but actually two times over concern about the dangerous precedent established by transferring these funds. We warned if funding budgeted to provide supports and services to people living with HIV/AIDS could be diverted on one occasion, then what would prevent it from happening again? Unfortunately, our concerns were validated because more money is being taken away from these important programs to fund the immigration child detention centers on our southern borders.

Insert the phrase: "We were right!"

Photo Source: virginiainterfaithcenter.org

The Trump Administration, rather than asking how we can ensure these funds are better spent as they were intended...to help meet the needs of the people living with HIV/AIDS more readily...has decided the epidemic is of less a public health concern than putting kids in cages.

We applaud AIDS United once again for leading the charge and holding the Trump Administration accountable for this thievery! We encourage you to read their recent action alerts in The Body:

• Hands Off HIV Funding and Immigrant Children!
• From Safety Nets to Barbed Wire: Secretary Azar Takes Money From HIV Programs to Pay for Detention of Immigrant Children

Among other vital program funding being raided again, State AIDS Drug Assistance Programs ("ADAP") stand to lose $5.75 million in unspent funding from the current Fiscal Year. This isn't so-called "fake news" either. A letter to Congress from Alex M. Azar II, Secretary of the U.S. Department of Health & Human Services ("HHS"), spells it out in plain language.

Think about it; there was over $2.6 million taken from HIV prevention programs. Like we still don't have people at risk for contracting HIV, right?

Think about it; there was over $6.3 million taken from mental health and substance abuse programs. Like untreated mental illness isn't an ongoing issue, right? Or like there isn't an ongoing opioid epidemic, right?

Think about it; there was over one million dollars taken from viral hepatitis programs. Like we don't have an emerging Hepatitis C crisis, right?

The fact remains that the people living with HIV/AIDS who reply on ADAP — and who rely on other HIV-related programs being impacted by this move — are PISSED OFF! Let me repeat, they are PISSED OFF!

Whereas HIV-infection can now be characterized as a chronic illness, nearly 20,000 people annually receive an AIDS diagnosis.[1] And yes, people still die of AIDS in this country, including some who cannot access life-saving treatments. People living with HIV/AIDS are watching their brothers and sisters struggle to endure the challenges present with this illness, all while their government appears hell-bent on undermining the progress made under the previous four Presidents!

Photo Source: accidentallygay.com|

Putting aside the inhumane nature of these immigration child detention centers (if that is even remotely possible, mind you), there is plenty of evidence available for people living with HIV/AIDS to be concerned over ongoing raiding of the funding from the Ryan White HIV/AIDS Program. The Trump Administration is infested with right wing, religious ideologues who frown upon people who are different from their WASP (White Anglo-Saxon Protestant) culture. Such evidence was on full display this week.

The sad reality is starring our HIV community squarely in the face. The Trump Administration doesn't care about people living with HIV/AIDS. There are simply too many examples to site, too. And far worse, there is no reasoning with the right-wing, religious ideologues who are pulling the strings behind the scenes. It's hard for our people to be tactful when their being punched in the face by bigots.

__________
[1] U.S. Centers for Disease Control & Prevention (2018, August 6). HIV in the United States: At A Glance (AIDS Diagnoses). Retrieved from https://www.cdc.gov/hiv/statistics/overview/ataglance.html.

HIV Stakeholder Surveys

By: A. Toni Young, Executive Director, Community Education Group

Community Education Group (CEG), a nonprofit located in Washington, DC  that is dedicated to ending HIV and related health disparities. CEG has a commitment to changing the way the world tackles public health in underserved communities. My colleague, Dr. Tyriesa Howard Howell, and I (A. Toni Young)  are conducting disseminating two surveys study to evaluate how nonprofit organizations around the world are preparing to ensure their sustainability. One participant from each survey who completes the survey in its entirety will be randomly selected to win a $200 gift card that will be electronically delivered by December 1, 2018.

• Survey 1: Project Boundless

https://www.surveymonkey.com/r/RYB9MH6

BACKGROUND
Throughout the 30+ years of the fight against HIV, medical advancements such as antiretroviral therapy (ARV) and pre-exposure prophylaxis (PrEP) have shifted the ways in which nonprofits (including CEG) have evolved in an effort to maintain the community's presence and engagement in HIV treatment and prevention. As a part of our evolution, community organizations have embraced our roles in Red Carpet linkage-to-care networks, transitioned from traditional behavior modification approaches by navigating community members to PrEP, and have expanded other areas in the services we provide. On the dawn of a new day in HIV service delivery, that being HIV cure research, we would like to learn more about your organization's preparation for the next phase of the fight.

WHY WE'RE ASKING
The purpose of our study is to inform how to best establish a global dialogue among non-government and community organizations concerning the impact of biomedical HIV treatment and cure-related research. This research will also help us understand how finding an HIV cure may affect organizational sustainability.

WHO WE'RE ASKING
Participants 18 years and older that are affiliated with nongovernmental, nonprofit and community-based organizations are being asked to participate.

WHAT WE'RE ASKING
Please complete our survey and share it with other colleagues on the frontlines of community-based HIV prevention and treatment.

This study was approved by the New England Review Board (Protocol No. 120180166).

• Survey 2: The Equitable Access Survey

https://www.surveymonkey.com/r/TFCWTTX

BACKGROUND
The Equitable Access Coalition (EAC) seeks to mobilize a diverse group of individuals and organizations reflecting persons of color living in rural communities in the South. We want to influence policy change and provide access to education affecting policy change at the state and county levels.

WHY WE’RE ASKING
Our purpose is to:
1.   increase access to HIV prevention care and treatment with an emphasis on PrEP;
2.   increase access to HCV screening, education, and treatment; and
3.   increase access to family planning and health services for transgender men and transgender women.
4. identify local and state policy issues

We are interested in organizations located in the Southern United States:  including Washington, DC, Maryland, Virginia, West Virginia, Tennessee, Kentucky, Arkansas, North Carolina, South Carolina, Georgia, Alabama, Mississippi, New Orleans, Florida, and Texas.

WHO WE'RE ASKING
Organizations and persons representing these key populations: people living with HIV and/or HCV, injection drug users, formerly incarcerated, harm reduction specialist, gender nonconforming individuals, transgender men, transgender women, same gender loving persons, persons with substance use disorders, heterosexual men, and heterosexual women.

WHAT WE'RE ASKING
Please complete our survey and share it with other colleagues.


Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.

3rd Annual National Monitoring Report on HIV/HCV Co-Infection

By: Marcus J. Hopkins, Consultant, Community Access National Network

The Community Access National Network (CANN) will be hosting its 3rd Annual National Monitoring Report on HIV/HCV Co-Infection on Wednesday, September 19th, beginning at 2:00 p.m. EST. This annual report provides valuable information on the state of Hepatitis C (HCV) treatment coverage, harm reduction measures to prevent transmission of HIV and HCV, and, new to this year, a brief focus on HIV and HCV testing and treatment for individuals currently incarcerated and post-incarceration.

Returning this year are yours truly (as the Project Director for the HIV/HCV Co-Infection Watch and Medicaid Watch), and Amanda Bowes, Manager on the National Alliance for State and Territorial AIDS Directors’ (NASTAD) Health Care Access Team. New presenters for 2018 include Ayesha Azam, Senior Director of Medical Affairs at the Patient Access Network (PAN) Foundation, and Jack Rollins, Senior Policy Analyst at the National Association of Medicaid Directors.

At last year’s National Monitoring Report, I focused on the increase in coverage options for both the Ryan White and Medicaid programs, showing how treatment options have expanded across the country since 2015 (when the HIV/HCV Co-Infection Watch began). Mrs. Bowes provided more detailed information available about coverage, as well as NASTAD’s efforts to expand coverage for Hepatitis C (HCV) Direct-Acting Antivirals (DAAs) within the nation’s AIDS Drug Assistance Programs (ADAPs).

This year’s event is sponsored by the ADAP Advocacy Association, Gilead Sciences, Merck, Quest Diagnostics, Walgreens, and the Pharmaceutical Research and Manufacturers of America (PhRMA).

The 3rdAnnual National Monitoring Report on HIV/HCV Co-Infection can be attended either in person at PhRMA Headquarters in Washington, DC, or remotely for non-DC residents. Registration is free and can be done online. While registration is free, there is limited seating for those attending in person and advanced registration is required to attend.

Learn more at http://www.tiicann.org/events.html#091918cr.


Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.

Older Adults with HIV: The Forgotten Majority

By: Tez Anderson, Founder & Executive Director, Let’s Kick ASS—AIDS Survivor Syndrome

Older Adults with HIV make up 60 percent of all people living with the virus in the United States. But the majority cohort continues to overlooked and ignored by HIV/AIDS care, services and community-based organizations, international and national AIDS conferences, and governmental bodies.

The median age of the people living with HIV in America is 58. Approximately 660,000 of the estimated 1.1 million women, men and transgender people living with the virus over age 50. A proportion that in 2020 will increase to 70 percent.

As HIV activists, we hear a lot about “key populations,” disparities” and “bridging the gaps.” The conversation usually revolves around gender, gender expression, race and poverty and the roles they play in people with HIV lives.

But the topic of Aging and HIV isn’t brought up. Why is it that the largest key population—Older Adults with HIV—is never included in these gaps? Why do older people with HIV receive the least attention, funding, and focus?

It would be easy to point the finger at discrimination based on age, or ageism. While that is undoubtedly part of the problem, there is more to it.

For one, HIV has all but disappeared from the mainstream headlines in the U.S. It was once a fatal disease and is now a “chronic manageable disease,” ignoring the fact that without daily medications it is still deadly. Most long-term survivors scoff at the idea that it is easily managed. HIV/AIDS is no longer on most people’s mind.

For another, the HIV care community and conferences have overoptimistically focused a cure (which remains elusive) and being “AIDS-Free” by some arbitrary date. It was once in 2020, and now it is 2030.

The people and agencies providing our care are more focused on the future while older adults are regarded as relics of a bygone era. Our lives are defined by mass causalities, enormous loss, caretaking, illness, and ensuing trauma. We hear little about the astounding resilience of the first generation of people with HIV/AIDS. We do not think of individuals living with this virus for 20 and 30-plus years are the pioneers of the AIDS epidemic. We are survivors of the worst epidemic in history. Alas, too often we are just thought of as old.

Examples of the indifference include the U.S. Centers for Disease Control & Prevention ("CDC") is aging data from 2013, old statics which vastly under-represents the present-day reality. September 18 is National HIV/AIDS and Aging Awareness Day. But the folks that originated the day have all but abandoned it. The website has not been updated years. If there’s a theme for 2018, I can’t find it.

This ongoing in indifference has an impact on the health and well-being of older adults. Lost in the apathy are the complexities and nuances of HIV and aging. What about our lives right now?

For instance, the differences in quality of life for long-term survivors and those older adults who have acquired HIV more recently. These facets matter.

Polypharmacy is a big word for the number of medications we take for “non–HIV comorbidities.” We appear to be aging at an accentuated rate too. Older adults with HIV are more likely to exhibit characteristics of people in their 60s, 70s or even 80s. In other words, 60 is the new 70 for those living with HIV for decades.

I often wonder if part of the problem is the aim established by the CDC and UNAIDS which states the “ultimate goal is achieving viral suppression.” They don’t have a vision for what happens next. What is beyond viral suppression for a population aging with HIV?

What about those living with HIV who are who’ve been undetectable for years. Then what? It seems to be the end of a conversation not the start of another dialogue about. How about we focus on what it will take to change the narrative to what it will take for healthy aging with HIV? How does that look? Isn’t that a worthier goal?

Aging is not on the agenda. It is time to change this. It will take us demanding it and not put up with invisibility. We are the ones that changed the face of healthcare advocacy for all diseases. Are we up for doing the something to envision an agenda for aging with HIV?

Some communities around the country are taking matters into their own hands and holding dedicated HIV and Aging Conferences. I’ve spoken at some of these conferences, and they are incredible. But are we not worthy of an “aging track” or the spotlight on the main stage at expensive AIDS conferences?

The thing I hear most from older adults and long-term survivors is they feel forgotten and invisible. If this is how we treat our aging population what’s the message we are sending to young people living with HIV?

It seems the focus is on “ushering in an AIDS-Free generation” and a concerted effort to End AIDS by, first it was 2020, now it is 2030. What does “ending AIDS” mean to those of us living with AIDS for decades? Most of us finishing it “after I’m dead.”

I know we can walk and chew gum at the same time. We can envision an AIDS-free generation and ensure that our health care system and services are empowering the first generation to live meaningful and healthier lives.

Learn more about Let’s Kick ASS—AIDS Survivor Syndrome online at https://letskickass.hiv.

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.

State Departments of Corrections Lack Focus on HIV Care for Former Inmates

By: Marcus J. Hopkins, Consultant, Community Access National Network (CANN)

It has been nearly 40 years since the HIV/AIDS epidemic began showing up across the United States, and after all this time, with the amazing level of resources and support available for those living with the disease, it became clear that there was little information publicly available concerning incarcerated populations. To that end, all 50 states’ and the District of Columbia’s respective Departments of Correction (DOCs) were contacted by the ADAP Advocacy Association and Community Access National Network (CANN) to inquire about their procedures for preparing inmates living with HIV for reentry into the general population. Not surprisingly, our research re-confirmed the disparities that exist in serving former inmates.

A few of the disparities are highlighted in the findings presented earlier this week in an infographic, which was made available by the ADAP Advocacy Association as part of its ongoing Correctional Health Project. The infographic can be downloaded from their website.

HIV is currently a disease that requires lifelong treatment that must be adhered to regularly in order to achieve and maintain Viral Suppression – when the Viral Load (the number of HIV virus cells active in the body) measures below 40 copies per milliliter (aka – Undetectable). With new data showing that Undetectable = Untransmittable, it is more important than ever for people living with HIV to have access to their medications in order to both stay healthy, and to prevent transmission of the disease to others. Former inmates deserve the same access to care and treatment as the general population, especially upon their discharge from prison.

We found that 31.3% of state DOCs fail to disclose the amount of meds inmates are provided upon release, making it difficult to track or accurately report the circumstances inmates face upon reentering the general population. In addition, 27.4% of states provide NO policy information on their reentry programs, whatsoever.

Rhode Island’s DOC has perhaps the most comprehensive HIV care program in the U.S. justice system, both during and post-incarceration. The state contracts with the state university to provide care throughout the inmate’s stay at state facilities and ensures that continuity of care continues by keeping inmates with their same providers after they leave (should they stay in the state). Additionally, inmates are provided with an excellent comprehensive reentry program that integrates the state’s Ryan White program and assists with the Medicaid application process. They also look into accessing HOPWA (Housing Opportunities for Persons With AIDS) to help provide housing if they are returning without a reliable home.

New Hampshire's DOC was unaware of the Ryan White Program. We were able to provide them information about the program and connect them with the state's Ryan White Director. NH is currently determining whether or not to incorporate Ryan White as part of their Reentry Program for inmates living with HIV/AIDS who do not qualify for Medicaid.

The latter story should be considered a success story for the Correctional Health Project – introducing state DOC’s to resources for reentering inmates living with HIV that can help them to maintain continuity of care between incarceration and reintegration into the general population is one of the primary goals. Additional resources will be made available on this project continues to unfold this year.


Read our related blogs on this topic:

• Improving Access to Care Among Formerly Incarcerated Populations with HIV/AIDS under the AIDS Drug Assistance Program (October 27, 2017)
• Linkages to Care During Post-Incarceration (July 5, 2017)

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.